Catfreak's Recovery Notes

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby magoo » Mon Nov 02, 2009 5:58 am

Wow! Sounds like an amazing day. The ability to continue walking and enjoying each day is one of the things I will never take for granted again. I hope you are feeling refreshed and ready for another great day!!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby catfreak » Mon Nov 02, 2009 11:42 am

Still feeling good today! Haven't gotten out to do anything yet today. Resting this morning. The hotel actually upgraded us to a bigger room today on a higher floor. We had a tiny problem and they went above and beyond to make us happy!!

Will post some more tonight.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Needled » Mon Nov 02, 2009 11:50 am

Cat, Keep on sending these good reports. I love it!
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Postby catfreak » Tue Nov 03, 2009 6:08 pm

Had my MRI/MRV and Blood work this morning and saw Dr Dake this afternoon. I am now off the Coumadin (yeah!!!!) :D :D :D

He said everything looked perfect on my stents. INR was 2.3, perfect he said. I filled out the questionaires again and he compared them and my answers were totally different this time around. My fatigue score was 32 this time compared to 63 2 months ago and my self assessed EDS was 2.5 compared to 4.5 2 months ago.

He showed me the pictures of my weird cyst and it is still there (it just has a stent next to it now)

He was very excited about my progress and is sending all my info to my Neuro and wants him to return my notes and test when I have my next MRI in February.

He is getting a lot of flack from Neuros about the procedure. All of you who have been know that he is very "here is the problem and let's fix it". I think that this is what is so wonderful about him.

Alex was not there and I was very sad we did not get to see her. We spent a lot of time with Angela and had a wonderful conversation while waiting to see Dr Dake.

No more blood thinners - Napa Valley here we come!! 8O 8O 8O 8O

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby bestadmom » Tue Nov 03, 2009 6:20 pm

I'm so glad that your visit confirms everything you've been feeling. Enjoy Napa. And those stinkin neuros are going to ruin it for the rest of us. Considering they are unsuccessful in managing ms symptoms, you'd hope they'd be above misery loves company, but obviously they are not with their agenda being so different.
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Postby CRHInv » Tue Nov 03, 2009 7:01 pm

Yeah! It sounds like you are really doing great! Go enjoy yourself now. This is all such wonderful news.
Take care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby BBE » Wed Nov 04, 2009 12:23 am

Hi Cat,
How about your MRI? You mentioned 8 or so, small, round and scattered lesions at the beginning. Any progress there?
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Postby catfreak » Wed Nov 04, 2009 4:48 pm

BBE,

No change yet, I get my regular MRI in February maybe we will see a change then.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Sharon » Thu Nov 05, 2009 7:40 am

Good news Cat! Enjoy Napa - you deserve a little relaxing fun.

Sharon
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Napa & Lunch?

Postby Ruthless67 » Thu Nov 05, 2009 12:32 pm

Hi Cat,
I'm new here, to TIMS, but you all have made such a believer out of me that I contacted Darcey and have sent my paperwork over. Now waiting on appointments. Yeah!!! I'm, going for it!!!!
I'm currently In Napa, CA staying at relatives close to the Silverado Counrty Club. If your still in Napa area perhaps we could meet for lunch?
Respectfully,
Ruthless
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Postby catfreak » Thu Nov 05, 2009 7:46 pm

Hi Ruth!

I am so glad you have decided to get tested. I am so glad I did.

We were doing the whole tour bus thing today. We were in Sonoma at lunch and I had no access to my computer. It would have been great to meet you and have lunch. We got back to SF at around 6 and went for supper so I am just now checking the boards.

I am considering having my 1 year check up with Dr Dake so we can come back to this area and visit again.

Maybe we will meet someday! That would be great. Keep me posted on the appointments.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby beechwood297 » Fri Nov 06, 2009 6:44 am

About the neuro's not liking this procedure. Of COURSE they don't. We are their paychecks...never get better and keep coming back.

They aren't fond of giving their best customers over to a surgeon and having a problem actually fixed.

Sorry, I am a little jaded when it comes to neurologists, whom I consider one rung below witch doctors.

But after they injected my neck with botox thinking it would help my problem, they lost all credibility.

Joel
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Postby whyRwehere » Fri Nov 06, 2009 7:18 am

Just to be fair, MS patients are not the only customers of Neurologists...they can still make plenty of money without MSers.
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Postby cheerleader » Fri Nov 06, 2009 7:22 am

just to clarify, why...Beechwood/Joel doesn't have an MS diagnosis. Docs didn't know what was wrong with him- he's going to see Dr. Haacke soon-
Here's his story:
http://www.thisisms.com/ftopict-8515.html

So glad you're having fun, Cat!!!!
xo,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby catfreak » Wed Nov 18, 2009 8:04 am

Hi everybody!!!

My life has been crazy lately! We got back from California Saturday the 7th.

Found out when I got home my work added 10 hours OT a week to the job. Wow!!

We started the week of activities for my nieces wedding, which was AWESOME!!! She was totally beautiful and we are so glad it's over. Talk about tired....... but I could not have done it all before CCSVI.

I go today for my Tysabri Infusion. I hope it does not make me feel bad this go round since I am working my butt off 50 hours a week.

Just wanted to check in and let everybody know I am doing so good!!

Take care,

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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